July 14, 2016

Hedley Cullen’s (AKA Jitter Bug) regular visits to Incendiary Tattoos
inspired a creative new fundraising idea! Hedley’s Tats for a Cure event
started in 2014 with support from this tattoo shop and raised $2500. This year at
Tats 2.0, they doubled their revenue, gave out 91 tattoos and served over 100
people at their BBQ.

Hedley served for 26 years in the Canadian Navy and retired
due to his symptoms of Huntington disease (HD). Upon his retirement,
Hedley searched for a new community to be involved in and found Incendiary
Tattoos where friendships were quickly formed. In past years, the shop artists
have purchased awareness decals that Hedley was selling in support of
Huntington disease. This sparked their support for the Huntington Society of
Canada and their friend Hedley, who they affectionately refer to as “Jitter
Bug”.

The owner Jim suggested holding an event at their shop and
they connected with the South Vancouver Island Chapter to get involved. At this
event, individuals donated $40-$60 and received a HD themed tattoo, whether it
was the amaryllis flower, the HSC logo or new this year, the semi-colon.
Patrons also enjoyed a BBQ that day!

Hedley shared his excitement about arriving for set-up that
day to a line of people outside the shop, followed by another highlight: All of
Hedley’s friends at the shop getting Jitter Bug tattoos in his honour. We are
all so grateful for the friends at Incendiary Tattoos, who donated their space,
time and talents for this event.

Hedley’s positive attitude and friendliness has inspired the
shop to commit to a yearly Tats fundraiser! Tats 3.0 is being held May 13th
2017, and the community is already excited!

July 04, 2016

The theme of the Hero run/walk was introduced to the
HD community this year by the staff in Chapter Development. This was promoted as
a way to show our appreciation to those affected by HD and their strength while
also being a fun family event through which we could reach people from the
general community and grow the event. People are encouraged to dress up as
heroes (whatever or whomever that may be to them) to come to the event. The
first Hero themed run took place on June 4 and it was a HUGE success!

The Exeter Hike has been Exeter’s annual run/walk
for 10 years and has been a staple in the HD community. Generously supported
and organized by the Knights of Columbus, the Exeter Hike has historically
brought in an average of $12,000 a year for the HD community. This year, due to
promotion on social media and the new Hero theme, the Hike brought in a
whopping $31,000!

Lindsay Groot, a key event volunteer, was a huge
part of growing the Hike this year, getting sponsorships and setting up
activities like the scavenger hunt, face painting, the bouncy castle, prize
table, and HD swag sales while the BBQ and registration were still run by
Knights of Columbus. These kids’ activities were added to create an opportunity
to grow the event by bringing in families, both inside and outside those
affected by HD. “I feel like people are getting ‘support fatigue’,” Lindsay
shared, “I really pushed it being a family fun day”. Local heroes such as
police and EMS, specifically fire and ambulance also came out to the event.
Police even allowed kids and others to climb into and check out the vehicles

Lindsay created a real system for attracting
sponsors by mapping the streets of Exeter and dividing into sections for volunteers
to easily tackle while on a lunch break, after work, or on the weekends. Lindsay
and her volunteers went through the Heroes sponsorship package that was put
together by Lindsay and the staff in Chapter Development, and discussed how to
“sell” it. They used their connections with businesses and tried to give ideas
and options for the kinds of things the specific business could give if they
did not wish to give cash. This led to over 35 prize sponsors, as well as
around $3,500 in cash sponsorships.

Every time a sponsorship was received, the company
logo would go up on the event Facebook page, and in return, the companies
posted the event poster on their page. This was a great way to spread the word!
“Facebook was key,” Lindsay shared, “lots of friends and family shared it,
which brought out people from about 2 hours away!” Newspaper articles as well
as radio broadcasts were also used to get the word out.

When speaking about the Hike and her wishes for it
to grow, Lindsay commented, “My dream of the hike is that it will continue to
be a family fun day where your endorphins are elevated from the moment you
arrive until the time you get home! That there will be so many fun memories
created people can't help but come back annually. I hope the following years
will bring out more and more people who either want to support the HD cause or
are looking for a fun day. Either way, it will lead to support, donations and
awareness!”

Through the efforts of Lindsay and her fellow
volunteers in putting together the success of the Huntington Heroes Hike in
Exeter, they became heroes in the HD community. Thank you to all who were
involved.

About Me

HSC aspires to a world free from Huntington Disease (HD). One in every 7,000 Canadians has HD, a devestating, degenerative brain disorder. The symptoms are like having Alzheimer's, Parkinson's and Schizophrenia in one disease. Every child of a parent with HD has a 50% chance of inheriting the disease. There is currently no cure.